Who should be included in health care conferences?

Patients, when represented as event stakeholders, generate richer conversation and wider dissemination of information on the social web, a new Medicine X study shows.

It was June 2016, and Audun Utengen and Larry Chu were in Washington where Medicine X was co-hosting a workshop as part of President Obama’s Precision Medicine Initiative. The focus was on patient-centered research, and the two kept hearing the same frustration aired by participants: Why are health care conferences generally accessible only to stakeholders from industry and academia? Given their purpose — to disseminate information, to facilitate networking, to get people talking — wouldn’t it make sense to involve patient communities as well?

Utengen, a co-founder of the social media analytics firm Symplur, took the question seriously. Would it make sense? Do conferences that include patients generate richer, wider conversation than their more restrictive counterparts?

With Medicine X researchers including senior author Larry Chu, MD and ePatient Nisha Pradhan, he designed a study to find out. The results, as measured by social activity and published in August in the Journal of Medical Internet Research, added up to a straightforward answer: Yes.

The team reviewed more than 7.5 million tweets from 1,672 conferences registered in the Symplur Healthcare Hashtag Project between 2014 and 2016. They then identified the 100 most influential participants taking part in the conversation around each event, sorted them into six stakeholder cohorts (engaged patient, physicians and researchers, non-physician health care professionals, journalists, other health care individuals, pharmaceutical organizations, etc.) and assessed performance of these cohorts against each other.

Patients, they found, outperformed their representation. While they made up only 1.4 percent of the stakeholders identified as conversation influencers, they did more than the doctor / researcher cohort, which made up 16.9 percent of influential stakeholders, to increase information flow and propagation, and — perhaps more importantly — to deepen engagement.

“Health care conferences that fail to engage patients in their proceedings as meaningful participants may risk limiting their engagement with the public, disseminating science output to a narrow community and slowing flow of information across social media channels, to the detriment of their academic missions,” the study concludes.

While the research team hasn’t addressed the follow-up question— Why? — they have several theories.

“We’re all humans, and we relate to stories,” Utengen says.

Patients, just by having a presence, can make conversations more real. They speak a language earned by experience, not by degree. And they force researchers to be more deliberate in their own choice of words, to communicate their research in a way that makes it accessible, and meaningful, to a wider audience.

More than 2,200 conferences registered hashtags with Symplur during 2016, and Utengen expects the number to be higher this year. He hopes the findings from this study will help patients make the case for their inclusion, even at highly specialized events with limited budgets.

Organizers, presenters, sponsors — they all have shared goals around reach and engagement, and promoting patient voices appears to be a relatively cheap and efficient way of achieving them.